Category: My Story

Well, if there’s anything I can say I learned last week week (in addition to chiropractors are dangerous), it’s this:

How very, very grateful I am not to have a permanent nerve injury.

I guess that’s sort of the obvious thing for anyone to say in this situation. But what really surprised me was that my biggest fear was not how difficult daily life was going to be if my nerve issues turned out to be permanent.

Instead, what scared me the most was that I might have to give up my chosen career– or, at least, not be able to do it in the way that I want.

It was sort of a reminder for me, in a way, of how much I really want to become a physical therapist. Because in my daily life, I often get bogged down in the practicalities. The few remaining prerequisites I would need to take in order to apply to certain programs. Taking the GRE (again, that is– let’s not talk about how I scored the first time!).

Last Friday, I consulted a neurologist, and was very encouraged by what she said. On the way home, I stopped in the town of Newburyport, Mass., which is always one of my favorite places to go in the summer.

I could feel my body telling me it was okay to move, that it was okay to start using my legs again. So I walked around and took in the sunset, gathering my thoughts.

And I was just sort of thinking of everything I’ve been working on so far– my classes, my blog, my Youtube channel (I have so many ideas for videos I mean to make!).

And of course, the e-book I’ve been working on– Exercises for the Sacroiliac Joint. It will be quite a bit easier to get back into concentrating on that, now that the question of whether I’ll be partially paralyzed for the rest of my life has been taken off the table.

As I have said before, I don’t necessarily think everything happens for a reason. But as my friend Nicole told me once, “You can make meaning out of things for yourself.”

So there a few lessons I can draw from what happened:

1) I need to explore alternatives to chiropractic adjustments. Who knows where this will take me? Maybe I’ll discover something even better, something that will benefit my future patients and make me a better PT.

2) I have such a better understanding now of what it feels like to have nerve damage. Before, it was something I only could imagine. Now I have felt it– thankfully, only for about a week.

And 3) What a reminder of how much I really do want to do this. I want to teach people, I want to educate (and thank God I’ll still be able to use my own body as a tool to do so with).

Sometimes I feel myself get slowed down by the demands of daily life, and the things I have to do just to get into school. So in a way, it was quite the wake-up call to get in touch with the fear I had, at the thought it could be taken away.

Technically, I suppose it’s bad form to brag about how much traffic you’ve been getting on your blog.

However, I feel like it’s a little different when a positive message comes with the bragging, so I wanted to share some of my updates with you all.

I’ve come so far from where I was when I wrote my first post about the sacroiliac joint. Despite everything I’d already been through with central sensitization and learning to believe in myself, I still had trouble taking myself seriously when it came to the SI joints.

I mean, I remember why I thought that way, when none of the doctors or physical therapists I saw seemed to know what I was talking about.

But now I know from running my blogs, and hearing from all of the readers who’ve shared their stories with me, that I was far from alone. I’ve been hearing from so many different people, and I think it’s safe to say that just about everyone who struggles with SI joint dysfunction feels this same way at first.

So, a big thank you to everyone who’s shared their story with me. Technically, you’ve been reaching out to me for help, but in the end, I think I’ve benefited as much as you. It’s meant so much to me to know that I was never alone, either, and that the topic I was so afraid to write about is now the topic that’s getting me the most views.

In that spirit, I wanted to share my traffic stats from February with you. My traffic over on My Sacroiliac Joint Saga has been increasing each month, and in February it hit an all-time high, of over 15,000 views.

While I wish Sunlight in Winter got anywhere near this much traffic, it just goes to show how many people there are out there looking for information on SI joint dysfunction.

I wish I could show you all of the meaningful emails I’ve gotten, but since I keep all my messages confidential, these numbers will have to do.

But to me, sharing these numbers with you isn’t about bragging– it’s about proof that good can come from sharing the parts of your story you think no one will want to hear.

I’ve just discovered Rachael Steil’s sharing of her story as an elite college runner with an eating disorder.

And I’ve really been blown away, both by her bravery in telling her story, as well as her clear and honest explanations of what she and other people with ED’s go through.

I still haven’t shared too much about my own past with an eating disorder– I started to touch upon it in this post— but really, I have a story that’s as long and complicated and intense as hers (minus the part about being an elite college runner– I had long been injured by then).

But I relate so much, to the concept of losing a little bit of weight, and finding it makes you faster, and so then wanting to lose a LOT more.

Of latching on to healthy, trendy “lifestyle” diets– in her case, the raw food diet– because ultimately, you know it’s giving you a way to hide the fact that you have a problem from other people.

And of the paranoia of thinking that if you overeat, even if just for one day, you’ll gain enough weight to slow you down and ruin your time in your next race.

I so, SO appreciated her story, and I can’t wait to read her book.

I think that, when talking about this kind of thing, it’s really important to strike the right balance between sharing the some of the scary aspects of what you went through, while also reassuring people that you eventually found a way out. That’s one thing that’s held me back from telling my story more– I want to be sure I do it right.

I think Rachael has managed to strike that right balance, so the way she tells her story is really an inspiration for me.

Okay, so here’s the story of the time I thought I’d found the right person to help me, which of course, made it all the more disappointing when it didn’t turn out to be the case.

In telling my story, I’m choosing to gloss over every little ache and pain I had; every time I thought I had some kind of injury, but no one could actually find anything wrong. It’s not really necessary to the story, and I don’t want you to get bogged down in negativity. The point, again, is that I did eventually find answers.

But here’s the story of the first time I thought I’d found them.

***

It was 2006; my first time seeing a physiatrist. Physiatrists are doctors who specialize in non-surgical options to treat musculoskeletal pain– so, basically, they do everything else. Their approach is generally thought to be more holistic. They can provide options such as lidocaine and cortisone injections, but they also look at the patient as a whole person and can recommend lifestyle changes as well. It’s a pretty cool specialty.

And I was pretty much seeing the best one. I loved Dr. V. the first time I saw her. She’d won all kinds of awards for going above and beyond to help her patients. And she was just so… nice. She provided me with so much hope.

Dr. V. reassured me that there was no reason, as a healthy person in my early 20’s, I shouldn’t be able to do all of the things I wanted to do.

She recommended a bunch of promising options, including trigger point injections, as well as medical acupuncture, which she actually performed herself.

And she was the first person to really explain to me that my brain was magnifying the sensations of pain I felt, “like a computer.” My brain was “zooming in” and making what should be a small problem, or no problem at all, look like a big problem.

For a time, I really thought Dr. V. was going to be the one to finally “fix” me, to finally reverse this impossible pattern I’d been dealing with for so long. I felt like she really got me.

***

Dr. V. seemed to understand that, from time to time, I would come in with pain in a new part of my body, and would need someone to tell me whether, in fact, I had an injury or whether it was just pain.

There were so many times. I felt safe; I felt believed. I just needed a place to go where someone could tell me whether or not I had an injury or not. I didn’t always need to be referred to physical therapy, or start some new treatment. Sometimes, the pain would just diminish once someone actually told me it was safe to ignore it. (Which, as I later learned, makes 100% sense once you learn about how the nervous system works).

The only thing is, Dr. V. did want to refer me elsewhere: to therapy. She seemed to understand that my brain was distorting my perception of pain, but she kept coming back to the idea that it had a psychological or emotional cause (which, I would later learn, is not a prerequisite for central sensitization).

She offered me the names of a few different therapists she had come into contact with over the years. I would go and see them, but nothing ever really “clicked.” Because we were looking for something that wasn’t there– my pain wasn’t being caused by my emotions.

***

What I really needed, again, was for someone to help me understand my physical pain. As I’ve explained in my Calming Your Nervous System section of this blog, when you have the kind of chronic pain I had (and still have, to an extent) it’s like your body’s pain protection system has gone into overdrive. It’s trying to protect you, but it’s stuck in the “on” position all the time.

Luckily, the nervous system is complex, and although there are multiple components involved in keeping this process going, there are other aspects of the nervous system which can be used to turn the system “off.”

One way to do that is to understand, rationally, that your body isn’t actually in danger; that you aren’t actually injured. This is actually the pain principle behind Pain Neurophysiology Education, the approach to chronic pain treatment that finally helped me.

Of course, I didn’t know any of this at the time, but I sort of stumbled upon this principle myself. A new part of my body would hurt (or an old one would start hurting again) and it would feel real. It would feel like something was wrong; something was injured or on the verge of breaking.

That’s why it helped me, to go in and see Dr. V. To be examined by an actual doctor and be told nothing was wrong. It helped my nervous system feel “safe” again. Usually, I’d start feeling better within a day or so after my appointment, before I even got to physical therapy or whatever next treatment she’d recommended. Because she’d already given my nervous system permission to relax and stop hyper-focusing on that part of my body. The pain would be able to fade into the background.

And I was okay with this pattern. It wasn’t ideal, but it was better than anything I’d found yet. We hadn’t actually been able to break this cycle of mysterious pain that roamed throughout my body, but at least, with Dr. V. I’d been able to find a way to stop it from taking over my entire life when it started to get bad.

***

But here’s the thing. I was okay with the holding pattern, but Dr. V. was not. Because I wasn’t actually getting “better” in a linear fashion that she could write in her notes. And because she could never actually find anything wrong with me.

There was one day I was 10 minutes late for an hour long appointment. I’d had to take the Red Line to Mass General, where I saw her, and everything about that morning commute had just been a disaster.

And from the moment she walked into the room, everything had changed. Her face seemed cold, like there was less color in it than usual.

And she told me she didn’t have time to see me that day. That I’d been taking time away from her other patients; other patients who actually had horrible diseases and disfigurements and reasons to be in pain.

She said she’d tried to help me, but I hadn’t successfully utilized any of the options she’d given me. And that if I wasn’t going to be responsible about trying to fix my issues, she wasn’t going to have time for me in the future.

And that was that. I started to cry and attempted to explain myself, but it didn’t matter. Her mind was made up.

She said she didn’t have time to stay and talk to me if I’d already missed 15 minutes of our 30 minute appointment. Her secretary, who I’d sort of become friends with, overheard the whole thing and poked her head into the room, gently reminding Dr. V. that my appointment was actually supposed to be for a whole hour.

But it didn’t matter; Dr. V. was so angry at that point that no new information was going to make a difference. It wasn’t really about the time; it was about getting rid of me.

She didn’t outright tell me never to come back and see her again, but by walking out of the room after 5 minutes, she’d made her message pretty clear.

So I never did.

***

Now that I know so much more about central sensitization, I can see that Dr. V. was wrong on multiple levels. This is why I like to remind people that central sensitization was actually discovered in rats. It has to do with brain function and neurons and neurotransmitters, not thoughts and feelings.

Somehow, it was like Dr. V. had vaguely heard of central sensitization somewhere, but hadn’t really gotten the full gist. A lot of people are like that, actually. They accept that the nervous system can process pain abnormally, but still think it must have to do with emotions.

And I never actually heard the term from her. I only learned it once I requested a copy of all of my visit notes and saw it there, in my list of diagnoses. It was #1: central sensitization.

That whole time– she could have just told me the name for it. I didn’t even know there was one. I could have learned about it myself– I could have Googled it. It was discovered in 1983. There was more information out there than I was given.

But no. Central sensitization was just there in two small words, right under a lot of passive-aggressively worded comments about exactly how much of my appointment time I’d missed that last time.

***

It’s sad and it’s really shocking. I do believe that Dr. V. is a good person who just didn’t have enough information, and who got frustrated.

But it shouldn’t be my job, to get “fired” as a patient and request my own office visit notes, only to finally learn there’s a scientific name for what I was going through that she’d never even bothered to tell me.

I could have looked it up myself and learned about it, instead of going on countless wild goose chases to psychotherapy and the terribly disappointing pain clinic she once sent me to.

***

But at least I have answers now, and you know what? I think I’m sort of proud of myself for getting as far as I did, on my own. After all, it basically means I’m a genius, since I was able to stumble upon the main principle of pain neurophysiology education all on my own (right?).

***

As you may know, what really did work for me eventually was to meet a physical therapist who had studied PNE with Neil Pearson. This physical therapist taught me how to understand my nervous system, and to work with it, instead of against it, and to learn ways to get my body to turn the “volume” of the pain back down.

This is why I feel so, so strongly about PNE, and why I was originally inspired to become a physical therapist.

In a way, Dr. V. is part of my inspiration as well– I see how important it is for healthcare practitioners to actually understand the specifics of how chronic pain works. It’s not enough to just be an empathetic person, because apparently empathy can be replaced by frustration over time, if a patient isn’t getting better.

I struggled with what to say on my blog this week, but I finally landed upon this idea as the thing that resonated with me at the current moment.

Something I’ve been realizing, more and more every day, is how much time I’ve spent judging myself for the problems I’ve had. Not actively trying to solve them… just judging.

On some level I didn’t trust myself. After all all of my difficulties in getting diagnosed and treated… at some point, I developed the belief that whatever health issues I was having, no one would really be able to help me. My issues would probably always be too complex for any one person to truly understand.

Now I realize that, just because other people doubted me, I didn’t have to doubt myself. And maybe, just maybe, I didn’t have to wait for things to get so bad before I took action.

In a way, my issues are too complex for any one person to understand, other than me. Idid have to step up, do my own research, and keep track of so many things myself. But now I see that that’s a reflection on our health care system, not on me.

Everyone is rushed; insurance companies don’t pay for long enough visits, let enough adequate treatments. (I personally feel that most of these efforts to reduce costs on the front end ultimately end up driving up costs on the back end, as people develop more serious conditions that could have been monitored or treated before they became more serious. But I digress).

There was never any real reason for me to lose faith in myself. My problems were real, and they had real answers. (And you know what? Even if they were in my head, mental health concerns deserve to be addressed too).

It’s like that quote from Eleanor Roosevelt:

“No one can make you feel inferior without your consent.”

For so long I gave so much of my power away… why?

There are so many bigger things happening in the world. Why am I wasting time judging myself and holding back, when I could actually be contributing to something larger than myself?

For anyone who’s been struggling to make sense of what’s been going on in the world, I stumbled upon another amazing quote today, that was just exactly what I needed:

I love this, so much. Do justly. Love mercy, Walk humbly. Nowhere in there does it say “second-guess yourself for trying to heal and then do nothing.”

I’m done trying to see things through the lens of “perfect” or how things “should be.” I want to see things clearly (both in terms of the way I see others, and myself).

Judging yourself is really just a waste of time.

I want to have compassion for others, and maybe, for the first time in my life, also for myself. I guess right now I’m learning what that means.

***

This post isn’t supposed to be about just me (although it kind of seems like it, now that I read it over). It’s actually supposed to be about getting “me” out of the way. To stop getting caught up in a cycle where I judge myself instead of doing things, for myself or for others.

If you’re reading this, I hope you know what I mean, and that maybe this post was helpful to you, too.